“I think you should gather the family”
(When I re-wrote ‘The Power Of Us’ to allow for the impact of Covid-19, something had to make room. The following section — the original prologue -is one of the deleted scenes. It’s intensely personal, but I’ve decided to share it because, as we face the real possibility of another national lockdown, there’s a sense of feeling defeated by this virus. If this personal account of facing life-and-death helps anyone at this time, it will have been worth sharing.)
I knew something wasn’t quite right when the nurse came to do the routine blood pressure monitoring. I was feeling relatively normal considering I’d had major surgery 5 days previously. I asked her to tell me the numbers . “60 over 30”, she said, no doubt trying to sound unconcerned — but I knew enough about blood pressure to know that was very bad news. “That can’t be right”, I said, “the machine must be faulty”. “It’s not faulty” came the response, and then she scuttled off. After that, things got intense. I was told that I’d need a scan, and could I drink a litre of revolting liquid as quickly as possible? I got half-way through it before I puked it all back up. A more senior nurse appeared and said, “That’s enough, he’s suffered enough — get the consultant, quickly”.
Thirty minutes later, the last thing I remember was being wheeled into the operating theatre, seeing my wife’s beautiful, smiling face, trying to reassure me that I was in good hands…..
What happened between that moment and waking up 3 days later, to that beatific smile again, is a total blank. But here’s the version that we were given:
In order to remove a cancerous tumour in my colon, I’d had an operation to cut out about 18 inches of bowel. I have a vague recollection of being told the risks of the operation, including a 4% chance of a leak, after the bowel is reconnected. They seemed like pretty good odds to me and, besides, those catastrophes happen to other people. I’d be all right.
Septic shock occurs when there is an infection present. It can present with a range of symptoms. In my case, (so I’m told) there was hypotension (abnormally low blood pressure), tachypnea (rapid breathing) and acute respiratory distress syndrome. Essentially, my lungs, heart and kidney were failing, as my body started shutting down. Imagine those YouTube videos of complex domino arrangements, tumbling spectacularly. The first one flicks the next, and the emergency practitioner’s job is to put them back up, before they trigger an unstoppable chain reaction. It’s not surprising, therefore, that the global mortality rate for septic shock is 45%. One-fifth of all people who get admitted to intensive care units have it, and one-third of all hospital deaths are as a result of sepsis.
In my case, so I was later told, I was a hair’s breadth away from kidney failure, and a lifetime of dialysis. My wife, Clare, was told to gather the family with the phrase no-one wants to hear, ``We’re doing everything we can”. My family and friends did duly attend to what most of them thought were their last respects — apparently, I had tubes sticking out of every orifice (including some specially created to mark the occasion). I can only offer secondary reportage of these observations because the attempts to prevent total shut-down, and subsequent death, meant that I was pumped full of antibiotics, saline and morphine. When I came to, I looked and sounded like the Michelin tyre man (look him up) would do if he’d been binge-drinking.
For the next four days and nights, I experienced my own version of the drug-taking scenes from the Trainspotting movie. Morphine vividly mixes reality and fantasy with a side dish of incredulity thrown in. On one evening, a woman was admitted with MRSA (that did actually happen). Her family sat around her bed singing songs from Sting’s ‘The Last Ship’ album which, coincidentally, I’d recently bought. Patient and family were sealed up in a large plastic tent, and then incinerated, all the while singing “When the Last Ship sails….”. I’m not sure that bit actually happened.
After I’d been in intensive care for a week, the surgeon who carried out the operation paid a visit. He still looked shaken by the ordeal, but by now I was feeling quite chipper (I was still getting morphine on demand) so I asked when he could re-connect my bowel. “I can’t”, he said, “Or rather, I won’t. You can try and find someone else to take that chance, but do you want to put your wife through that again?”
It was a fair point. “So, what happens now?”
“That stoma we’ve created in your abdomen will be with you for life. It’s not perfect, I know. But it’s better than the alternative.”
Up until this point, I didn’t even know what a stoma was. I’d heard the jokes about colostomy bags, but that was about it. There’s still a taboo around talking about stomas and pouches, so ignorance abounds. I didn’t know, for example, that most people living with a stoma aren’t like me — they’re people in their 30s with Crohn’s disease, or ulcerative colitis, who elect to regularly empty their bag, rather than live with the crippling pain of their condition. And there are a lot of us — if you gathered all the stoma folks in the UK together, we’d fill Wembley stadium one-and-a-half-times over. (Not that you’d want to do that — can you imagine the queues for the toilets?).
Three months post-discharge, I told Clare that I wanted to go back to the ICU and give the staff a small Christmas gift, in appreciation of the incredible care they’d taken. She seemed reluctant but I blithely insisted, “I’m fine, I’m fully over it, physically and mentally”. She led me into the unit, which, other than extra nurses and more machines, just looked like any ward I’d ever been in. I said to her, “This isn’t the place”.
“No, this is the place, love. I came here twice a day for four weeks.”
“No, the place I remember had soft blue lighting everywhere, and padded booths around the beds.”
“That was the morphine, love.”
Even more disorienting was the fact that I couldn’t recognise any of the staff. I told them my name, but they couldn’t remember me: why should they, when they would have treated hundreds, perhaps thousands, of patients since then? I left the chocolates and, feeling slightly deflated, we walked towards the exit. And then I heard a voice call out, “David, is that you?”
It was Angel, the Filipino nurse, who lived up to her name in nurturing my immediate recovery. She had shown particular tenderness when the pouches kept leaking, or during those dark nights of the soul, when I wondered if I was ever going to feel ‘normal’ again. Those 3 a.m. conversations. The gentle reassurances. She was a saint.
“You look so WELL. I nearly didn’t recognise you!”
And then something just broke. I fell into her arms, and sobbed like a baby. I still cry, everytime I think of her. And afterwards, when we got home, the soul-mate who shares my life was finally able to tell me what had happened during those missing three days….
But what does my brush with mortality have to do with a book about mass ingenuity?
Getting a cancer diagnosis is always one of those moments that are indelibly time-stamped onto your memory. You can remember exactly how you felt, how you reacted to the news. Even if it’s not your first time. You see, six years previously, I’d been diagnosed with stage two prostate cancer.
With the proliferation of patient blogs, we’re now quite familiar with first-person cancer narratives, so I won’t bore you with another one. But my first brush with the disease, in 2009, was at the dawn of social media and ‘Dr Google’. The advice and support that I received from fellow patients was invaluable. I learned about other treatments and gained first-hand experience of side effects to look out for. Increasingly, I started to come across people who were putting their vast knowledge to use in ways that could be considered either innovative or dangerous, depending upon your point of view. I visited people, in Germany and the Netherlands, who were treating their own cancers, or those of their loved ones, with protocols they’d shared with other ‘non-professionals’. Some had achieved startling results, while others had failed to keep themselves and others alive. In truth, the people that didn’t make it had mostly run out of conventional treatments by that stage, and figured it was worth a try.
These patients and carers have been designated ‘pro-ams’, and how our established institutions engage with lay people with professional levels of expertise has always fascinated me. Fortunately, my prostate oncologist encouraged me to investigate complementary treatments alongside the standard of care he could offer. By the time of the second cancer diagnosis, the prostate cancer was in remission, and I ‘d written a book about the democratisation of knowledge. I’d had hundreds of conversations with patients and professionals, who’d had similar experiences and had become pro-ams.
So, six years after having my first cancer treatment, I found myself at an initial consultation with a colorectal surgeon. I shared some of the options the pro-ams had alerted me to, their success rates and their attendant side-effects. I was barely getting started when he interrupted me, with clear exasperation:
“Look, don’t overthink this — just have the surgery!” Then, picking up his notes, he was gone.
My response to this outburst was to resolve to find another surgeon. The fact that I subsequently chose one who, although a sympathetic listener, was fallible with the needle-and-thread, misses the point. The medic who would rather have patients unquestioningly follow his/her judgements, or the CEO who doesn’t believe in finding out what consumers think, or the school Principal who doesn’t engage with student views because ‘we’re the experts and they’re the novices’, belong to another time.
The distance between producer and consumer has all but disappeared. Users of products and services are rewriting the rules that shape our lives — not least the rules that determine how we are governed. The smart organisations are becoming ‘people-powered’ — they accept that they can no longer do things on their own. They’re co-designing, co-producing, co-campaigning.
A tide of self-determinism — the power of us — is affecting all aspects of our lives. To pretend it’s not happening, and that we can continue to divide the world into neat little boxes, is not just putting governments, public and private sector organisations, and national prosperity at risk — it’s ignoring the incredible potential of our collective, collaborative, ingenuity. We’re now more curious, more able to solve problems, more creative, than we’ve ever been. It’s one of the upsides of the torrent of knowledge that now swirls around us. Our children have access to a breadth and depth of knowledge that we could never have imagined in our own childhoods.
What we routinely call the ‘wisdom of crowds’ has been evident for some time, popularised by James Suroweicki’s eponymous book. It was initially thought to infer a collaborative approach to decision-making by groups ahead of those taken by powerful individuals. There’s so much more to the sharing of knowledge, however, than making decisions. This book attempts to describe the actions, products and services that are to be found wherever people come together. In the main, they represent an approach to problem-solving, to figuring things out, that’s rooted in a communal desire to make the world a better place in which to live. We’re a remarkably creative species, uniquely capable of abstract thought, complex communication systems and laterally combining ideas from myriad knowledge domains, in order to make something anew.
Why wouldn’t we want to put that to good use?
